Elise has been doing really well lately. We're no longer hearing complaints from school, so that's a huge stress relief. She's really connecting the use of expressive language for her wants & for labeling. She'll now ask for help, respond hi or bye when people say the same to her (unprompted), seems more comfortable using labels in front of people (she used to practice alone and stop when she'd realize others were listening), will say "I want ..." and is producing more kinds of sounds. I'm incredibly proud of her. It makes me cry to realize how hard she has to work to do such a simple thing like tell me what she needs. I admire her so much for continuing to work at this instead of giving up and retreating into her own world, which I'm sure would have been much easier for her. I believe we've, at least for now, successfully instilled a desire in her to join the world of neuro-typicals. As long as she has that desire and we can provide the proper tools for her learning, there is no limit to her potential. I do still live in fear that she won't maintain that desire or that we won't know or have the ability to provide her the tools she needs. Then, she could be lost. I try not to think about that. At least for now and for the near future, we seem to be on a really good track.
The last few weeks have been difficult. I worked really hard to schedule time with a nearby doctor who works with autistic children from all over the world. I've invested a lot of faith and hope that he will be able and willing to work with us to help Elise. He says everything that I've been longing to hear since I first realized Elise may be autistic. He says that she is medically compromised and that her medical needs should be addressed, not ignored under the autism label umbrella. What I mean by this is that there is a tendency to write off many of her seeming health issues to "autism", a neuro-psychiatric disorder, instead of searching for medical reasons to her individual symptoms. For example, the fact that she is sick much more often than anyone else in our family, that she has constant dark circles under her eyes, that she has BM's that regularly will clog our toilet. that she has been noted to have hypotonia, and that she suffers from speech apraxia and anxiety. True, all of this things are commonly found in certain autistic individuals, but they are medical concerns in and of themselves.
This doctor theorizes that autism stems from a neuro-immune deficiency in these children. Many of these children come from families where auto-immune disorders are prevalent. Many of these children were born to mothers who suffered unexplained infertility and who suffered pre-eclampsia. Many of these children were born prematurely. A fair number of these children are part of multiple sets. Many of these children developed typically for the first year of their lives and then slowly signs began and then exacerbated, sometimes suddenly. For Elise, there were very few signs in her first 12 months. Sure, I can pick apart things now, but frankly I could also pick apart things for her brother A in his first 12 months too, but he's not suffering from autism. After 12 months, signs began and there was a slight worry that grew until her 2nd birthday. At 24 months, it would be a lie to say I wasn't becoming very worried. At 25 months, she slipped away from us overnight. No one has ever been able to explain to me how croup resulted in us fully losing her to autism. In fact, until this doctor, no one seemed to even think there could be a correlation. I'm not a fool, croup of course did not make my daughter autistic. However, that virus triggered the autism process that had already begun and it turned into a full-blown, undeniable loss, that occurred literally overnight. The child I took to the hospital that night was not the child I brought home. If it hadn't been croup, it would have been something else. I know this in my core, but someone needs to believe me when I say that I also know that virus affected my baby tremendously, way more than seems medically reasonable. This is what I believe, no, this is what I know. Others may call me crazy, but for me this is fact.
In steps this doctor who is frankly quite a zealot. I've placed much faith in his theories because they line up so perfectly with what I independently say I know. Are my emotions interfering with my judgement? Perhaps. God knows I'm always quick to doubt myself. The doctor wants to start Elise on a course of Valtrex. This is the medication that is used to treat Herpes. It is an anti-viral. There really is no reliable test that shows Elise has a virus that is contributing to her autistic-like symptoms. However, he believes as firmly as I do, that this is at the root of Elise's problems. The standard practice for him is to try a course of Valtrex. If she becomes irritable and reacts in negative ways initially, then you keep up with it as it means the Valtrex is working on a virus. If she has no negative change in her behavior, then we're both wrong in our belief. In steps hubby. He, in not so many words, basically thinks we're full of sh@# with this theory. He doesn't trust the doctor and worries that he may actually be harmful. I never imagined that our gut feelings could be so polar opposite. Without his support, I can't start Elise on a pharmeceutical. That would be really wrong. However, I honestly don't think that I can live with the question of not following my own gut feeling and trying. It's been a challenging two weeks. Tonight I e-mailed Elise's pediatrician to see what she thought about trying the Valtrex. We both trust her opinion. If she says it's not harmful, we will try the Valtrex. I just hope that, if we do try it, hubby will be willing to stick with it long enough if Elise does react with negative behavior to it. I'm frustrated that all of the work and research I've done on this, the hours I've spent and the hope I've invested, has possibly been for nothing. I chose this doctor in part because he is a board certified pediatrician and believes that many of the things the DAN doctors are doing with mega-vitamins, chelation therapy, HBOT and other things are harmful. This doctor is taking what he feels is the "safe" route to helping autistic children. I see him as the in-between to the riskier DAN doctors & the laissez-faire mainstream pediatricians. I just don't want to let go of my strongest hope to date.
Well, all of that said, Elise is steadily improving. She's trying to interact with her brothers now, is enjoying school, understands everything and is solidly a typical 2 year old. Of course, there are many things that are more developed than a 2 year old, but with her communication & social delays, she has only accomplished all the developmental stages up to what I assess to be a new 2 year old level. When I treat her as a typical 2 year old instead of an autistic 4 year old, she seems to respond very well. I try hard not to focus on the fact that my 4 year old is only fully developed to a 2 year old level and that others may not even agree that she is that far along. I chose to focus on the fact that last year at this time her development was very jagged and several key things were keeping her on a baby level. She has moved forward and is being taught all of the key developmental stages in the correct order and is open to learning them. When she's 20, it won't matter if she's like an 18 year old. At some point, 2 years difference will be pretty meaningless. We just need to keep her moving forward and on track each year now.
I have my repeat ERCP procedure on Monday to have my biliary stent removed. I'm sure all will go well. I've been overly paranoid the last few days as I've suddenly been becoming tired again and needing to take Tums. It's probably just due to the stress of our home buying situation, the audit at work and my boss quitting (lots more responsibility and work on my shoulders), the upcoming procedure, Elise's medical things & life in general. Hopefully some of these stressors will resolve this week. For sure, the procedure stress will resolve :)
